Grant: Operating Grant: Knowledge Synthesis Grants: Allied Health and Genetics

Chronic kidney disease (CKD) affects over 13% of the global population and represents a major health burden in Canada. In many cases-especially in children and younger adults-CKD is caused by an underlying genetic condition. Identifying the genetic cause of kidney disease can be crucial: it can guide treatment decisions, help predict disease progression, and identify at-risk family members. Around the world, multidisciplinary renal genetics clinics that bring together nephrologists, geneticists, and genetic counsellors, are helping patients to receive more integrated care. However, most of the evidence comes from the United States, where the health system is very different from Canada's. In Canada, there are unique challenges such as long wait times, limited access to genetic experts, and the needs of rural, northern, and bilingual communities. Because of these differences, Canada needs its own data to design services that are fair, effective, and sustainable. This project will be the first national study of kidney genetics services in Canada. We will review global evidence, survey patients and healthcare providers across the country, and analyze patient data from the McGill University Health Centre's Renal Genetics Clinic. Our goal is to identify barriers to care, understand patient and provider experiences, and develop practical tools-such as referral guides, education materials, and digital resources-that can be scaled across Canada. We will conduct surveys and interviews with nephrologists, genetic specialists, and patients to better understand the current landscape of renal genetics care in Canada. Based on this input, we will co-develop new resources to improve access, and guidance for establishing similar clinics across the country. Ultimately, this project aims to improve access to timely diagnosis, integrated care, and equitable support for individuals and families affected by genetic kidney disease across Canada.